The Lupus Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
14 Posts
Discussion Starter · #1 ·
Hi,

I haven't posted for a while, been unable to use my computer for a long time however i am pretty desperate now and decided i needed to ask you all for some advice.

I have been diagnosed with Lupus now for over 3yrs have tried all meds going from hydroxychloroquin to mmf to the last one which was rituximab last summer (2nd dose last June) unfortunatly things have just got progressivly worse and to make things really really bad my rhemy has just been forceably retired!!

i had a great relationship with hom as i'd bulit it up over the past 4 and half yrs, so much so that i travelled from the Isle of Skye in Scotland to Liverpool to see him which id nearly 8hrs along with my fantastic husband and two young children. Although he had no new drugs for me to try he gave me hope for the future which is better than nothing i think.



I have just had 2 appts with a new rheumy in glasgow and am totally confused as to what to do next. he does not seem to have any clue about SLE has no plan for helping with possible treatments and just wants me off the steroids and pain meds without any replacement therapy. I have got down from 17.5mg pred a day to 7.5mg and have increased my morphene patch to 50mg day with the 8x co-codamol.

I am in excruciating pain daily can barely move all my symptoms have got worse. i can't even go out with my children as the sun issues are so much worse!

sorry for the long winded rant but i just wanted you to have a bit of backgroung b4 i asked for help.... can anyone reccomend a good rheumy anywhere in the country that it might be possible for me to see? i have no problems travelling if the journey is worthwhile. I had another scan yesterday and i now have osteoperosis in both hips and spine,

i am only 29 and as i said b4 all i want right now is a wee bit of hope cause i know there is no medication available.


Anyway thanks for listening hope you can help.

Baileys :rolleyes:

SLE,APS,IBS,GALLSTONES,OSTEOPEROSIS............
 

·
Registered
Joined
·
7,800 Posts
Hello there,

First of all, I'm SOOOO sorry to hear you are in so much pain and have been so badly let down by this doc.

I have two lines of thinking here.
It sounds like you need very urgent help. Getting a quick appointment, even privately, in Scotland might not be easy.

It might be worth thinking about getting an appointment at St. Thom's or the London Lupus centre to get you back on track. They have an excellent team there and could also write your GP a letter with recommendations/referrals to someone they would recommend closer to home.

In Scotland I have heard that Dr Asad Zoma (also recommended by the LLC)is excellent as a lupus doctor. The major problem being that even as a private patient, you'll have to wait about 18 months to 2 years for an appointment never mind on the NHS.

I also believe that someone mentioned a NEW connective Tissue Clinic which had just opened in Glasgow (Loopyloo I think?).

Again, I'm so sorry to hear of that degree of pain, you are very right to take action and seek help elsewhere and I think that help needs to be sooner rather than later.

hugs :hug:
Katharine
 

·
Registered
Joined
·
15,684 Posts
:( ((((((((((((baileys)))))))))))) I'm sorry you find yourself in this position, I don't know what I would do if my doc retired :eek:

Here's the link to another post you made about recommendations for a doc, it was Loopylou who had suggestions for you in Scotland and you can contact her via Private Message.

http://www.thelupussite.com/forum/showthread.php?t=70207

Apart from that I do agree with Katharine's suggestion of going to St. Thomas's in London - they have some top notch internationally recognised Lupus experts and would certainly be able to get you on the right track. However the follow up system with St. Thoms can be a long wait between appt's for some but it's worth discussing that with them if and when you see them. You do seem to be in dire straits so maybe they would take that into consideration. Your initial appt with them would probably not be too long away though, so if the distance isn't too much of a problem then it's certainly worth a shot.

Take care and many hugs to you.

love
Lily
 

·
Registered
Joined
·
14 Posts
Discussion Starter · #4 ·
help....update

Thanks alot to you all i have had some really positive advice which has been really helpful especially at the minuite!
I think i might have got the right person at MRI which would be great as it's only an hour or so from our parents so we can leave the children there like we used to when we visited Liverpool Royal, managed to get my gp to fax a refferal letter through today and i'm waiting for an appt now could be 5-6wks :( but am trying to stay positive and maybe it will be sooner.

Thanks again, i forgot how helpful it is sometimes just to get a different perspective on things :wink2:

Will keep you posted...

Baileys
 

·
Registered
Joined
·
1,835 Posts
I am sorry for your situation. I hope you get an appointment really fast!

I want to say that my husband and I visited the Isle of Skye about 6 years ago...what a lovely place! I have never seen anything so beautiful as the shore lines and valley's there on that Island!

We spent 2 days driving around the Island and seeing everything we could. I think I like the Highland cattle the best, they look just like gigantic dogs, and they arer so sweet. I stopped everytine I saw one to take its picture (I think I have about 80 photos of them).

Just wanted you to know how much we enjoyed our visit!

Stephanie
 

·
Registered
Joined
·
2,404 Posts
I have a friend in the Western Isles, she has found getting help very difficult indeed. I hope something works out for you. Dr. D'Cruz or Prof. Hughes in London are excellent if you do need them after all. I am glad you are able to travel, that is a big blessing.
Will be thinking of you and hoping you don't need to wait too long to get seen.
x Lola
 
1 - 6 of 6 Posts
Top